A Double Whammy to Autism

As if parents with autistic children didn’t have enough to worry about. They get a big stigma-whammy from other parents, from schools that only pretend to be accommodating, and from a health-care system that puts autistic kids in the back of the back ward.

That’s one whammy.

I’m going to have to background the second whammy for you a bit. Some children with autism have a variety of twitches and fidgets that pediatric psychiatry currently classifies as “stereotypic movement disorder.” In fact, these repetitive movements and posturings are a form of catatonia, and adult catatonia has just been recognized as a real disease – independent of schizophrenia – in the recent Diagnostic and Statistical Manual of the American Psychiatric Association, called DSM-5.

Now, these movement disorders can be very serious, including head-banging, head-punching, lip-mutilating, and other forms of self-injurious behavior. The children may detach their retinas and go blind, or induce a cerebral bleed. When SIB occurs, it’s a medical crisis.

And parents with SIB children are at their wits’ end. They put football helmets on their children, splints on their arms so they can’t bend their elbows and hit their faces, bulky pads on their tummies so they can’t knee-jerk themselves in the face. It is horrible.

In the face of the massive crisis of SIB, there is one piece of good news: It is eminently treatable.

I hear you. “Doctor, doctor, tell us what the treatment is! We’re all ears.”

Wait for it.

The treatment is shock therapy. And it really works. Electroconvulsive therapy (ECT) has established itself as a safe and effective treatment in children with SIB. There are very few side effects. The children do not lose all their memories. Their brains are not damaged. After a series of stimuli, the SIB lessens markedly and may even go away. The children are able to leave all restraints behind, and go home, and play Little League.

The effects of ECT in the catatonia of autism are little short of miraculous. And in treating that form of catatonia called SIB they are in fact miraculous. Everybody on the ward is in tears as these children are able to go home. The parents are sobbing. Dear readers, I hope that you never have to experience this in your own children, but if you do, you will be sobbing too.

So here’s the second stigma-whammy. ECT in autistic SIB and other forms of catatonia remains deeply frowned on by the medical establishment. The media haven’t even heard of it, but once they do, you can predict the headlines: “Shock Treatment Forced on Autistic Children.”

At a recent autism conference at the National Institutes of Health in Bethesda, a physician who specializes in SIB made a brief presentation and mentioned ECT once. The chair of the panel, one of the heads of the NIH institutes, told her that her time was up and asked her to sit down (she courageously continued to speak anyway). In the following discussion, a nurse, whose only apparent credential was that she had seen “One Flew Over the Cuckoo’s Nest,” announced that ECT was a harmful and dangerous procedure. And afterwards, agitated posts flew around the social media on the Horror of Bethesda.

So stigma? Yeah. Don’t get me started.

If medications or psychotherapy could help these children, bravo! But for many, ECT is the only procedure that will give them back their lives, and bring peace to parental minds.

So I want to mention an upcoming conference on Dec 4, organized by the good guys, the EASI Foundation in Philadelphia. This stands for Ending Aggression and Self-Injury in the Developmentally Disabled, and the foundation is led by Amy Lutz (amy@easifoundation.org). Among the speakers will be Dr. Lee Wachtel, who heads the Neurobehavioral Unit at the Kennedy Krieger Institute in Baltimore and is an associate professor of psychiatry at Johns Hopkins Medical Institutions. (See, Wachtel & Shorter, 2013; Wachtel & Dhossche, 2010).

A lot will be said at the conference about ECT. There will probably be demonstrations in the streets by the antipsychiatry fanatics (“No Shock Therapy for Kids!”), and I dread to think how the media will cover this.

But the main objective here is the successful treatment of these terribly stigmatized children rather than looking good for Barbara Walters. The ace card is science, not public relations.

Nothing new about electric shock therapy as a cure all and forcing it on the weakest most vulnerable members of our society. It's not a cure, it is a crime. To call it a cure or even a treatment weakens the entire psychiatric and medical professions to quackery and hocus-pocus nonsense. Just shows how people love to hurt each other and call it progress.

...as someone with schizoaffective disorder and hf autism, I can tell you with no reservations whatsoever that ECT helped me, and that there is a decent possibility that without it I would not be alive today. I would have caused myself lethal harm.

It's important to note that I went into it willingly, armed with actual knowledge about what it entails. I read arguments from both sides, watched videos of the procedure, and even spoke to people who had been through it, and took both pro and con into consideration when I made my decision. Well-informed, I chose what was best for myself, and I would take all the same things into consideration if it was my child instead of myself.

I think it's more difficult for a parent than if the patient is yourself. ECT gave me back control over my life. It's not hocus-pocus. It's science and I'm eternally grateful for it. I'm sorry if your experience was different.

I am a retired psychiatric nurse. For many years, I specialized in ECT. ECT is a safe and effective treatment, and I have seen it produce almost miraculous improvements for many people. I have also seen people who were not helped with ECT. However, if it treats SIB, I think it is a worthwhile option, especially as there is no other treatment that works. My two grandsons have autism, and both are able to attend school in mainstream classrooms. They do not exhibit symptoms of SIB. If they did, I would wholeheartedly support a decision to use ECT. I know that is it not inhumane or barbaric, although it is often portrayed as such in the popular media. I am happy that there is a treatment option to offer people with SIB.

Hi, many have used cannabinoid medications to reduce SIBs and other symptoms of autism. May I suggest alexneedshelp.com as a starting point? Drop into the 'cannabis for autism' page on Facebook if you have any questions, you don't have to be alone in this. Good luck to all.

I think more information about the levels of electric shock used, duration, how it effects the brain, muscles, etc. is on order here. When electric shock is used in other ways on the human body, (and I know it is probably not used in exactly the same way but for lack of another example off the top of my head) using the tens unit on the muscles surrounding the spine where a herniation is located, for instance, can relieve pain and muscle tension for long enough to allow the spine to relax and return necessary fluids and signals to the proper areas they are supposed to go - rather than having an inflamed, agitated nerve that doesn't sufficiently supply the organs it is connected to with the signals to help it function properly, now you will have more normal function because the pathways are cleared and routed properly. Am I on the right track?

I think the person who commented that they think using electric therapy is a crime perhaps needs to learn more about how they use it rather than to just assume they use it in a harmful way.

I know that my own daughter, who is not as severely autistic as others I have met, has many sensory issues that are relieved by hard pressure on her bones - when I do deep pressure therapy on her and press the bones in her fingers, arms legs and toes, it 'wakes up' her nerves in such a way that she is less anxious and more aware of her surroundings and just everything in general. But I know if someone without the understanding of what I was doing to her when I do deep pressure therapy on her might think I was hurting her. However, this is something she enjoys, and actually will 'ask' for - it makes her feel better. I know this is true because I will be laying on my back reading or watching TV on the couch and she will come into the room and begin to cram herself under me - feet first - until she has stuffed her whole body under me and I am still laying on my back, but on top of her. It's bizarre, but she loves it and I know she has sensory issues.

I have a seriously disabled daughter that has very severe SIB. It affects every single aspect of our lives. She constantly hits her own head to the point of bleeding profusely if not stopped. We can't go places because of this behavior, I don't get full nights sleep, can't finish chores around the house, can't drive the car unless someone else is there to hold her hands etc. It affects my other children and my ability to parent them. Anyone who says that they would not do everything in their power to bring some normalcy back into their lives hasn't suffered through a situation such as ours. It is a serious medical issue that brings you to your knees literally. Not only is it physically harmful to my daughter but it is emotionally devastating!!!I have not looked into ETC but after reading this article and doing extensive research to thoughtfully determine if it was appropriate for my daughter, you can bet I would consider it if I thought it would relieve my daughter and our family of this nightmare!

I think that other posters are correct in pointing out that old movies like "One Flew Over The Cuckoo's Nest" depict earlier forms of ECT that are no longer in use, and in that particular film ECT was depicted as a brutal punishment.

That one film probably did generate a lot of stigma against ECT.

Apparently modern ECT is quite different; the dose of current is much lower and the treatment is given while the patient is under anesthesia. From what I've read, side effects are less likely to occur than with drug treatment.

So, maybe a high-powered advertising agency would be available to create a public-service campaign to educate the medical community and those who could benefit from ECT, that its a safe and effective treatment.